Within a few months of Jacks operation I noticed something coming from Jacks ear. On futher inspection I discovered he had lost one of his grommets, we quickly made an appointment to see the hearing specialist to be told they would not be replacing it.
As the months passed and Jack became more acclimatised to the outside world it seemed as if he was making progress. He started reciting nursery rhymes and acting out actions that he had seen on video. But he made no effort to point or speak, he never asked for anything using words or gestures. I needed to get through but how.
I continued seeing various specialists' paedatitricions and health visitors who all offered advice but it was not enough. I felt I was not given any hope or encouragement from anyone.
After countless appointments, which led to referrals, which led to more appointments. More poking and prodding more tests, monitoring, more sympathetic looks and what seemed an awful lot of precious time wasting.
We were called to a meeting. We were sat in a room of "professionals" who discussed our son. We were then told that they all agreed on a diagnosis AUTISM.
They told us our son was autistic and handed us a black and white leaflet to read. We took it home, read it and were appalled. NOT at our son's diagnosis but at the weak negative leaflet that we had just been given which was undoubtedly very out dated. We quickly disregarded the leaflet and set out to find as much information as possible ourselves.
Every one seemed to want to tell me what Jack was not, could not, or possibly never would do, but no one seemed interested in what he could do with the skills he did have.
" If he does not speak soon he possibly never will".
" He does not point because if he has seen something you will have seen it anyway".
" You should consider putting him in a special school".
" You must be firmer".
" He cannot relate one experience to another".
" He does not give eye contact".
On and on and on. negative, negative, negative
People were very quick to cast their opinion but would not support me in mine. Why could they not see this special little boy who I knew was desperate to be heard. At times it felt like Jack and I against the whole world. Even the people I loved most in the world apart from my precious children seemed a million miles away from me.
The conversations would be How's Jack? Is he better yet? He`ll be all right.
It was so frustrating I wanted to share my experiences with them, I knew how much they loved me and my children and also knew they would do anything they could for us except the one thing I really needed.
Understanding, to accept autism and the road ahead.
My parents lived over 200 miles away and would rush down at the drop of a hat to help out in any way possible, but for others it was just too much. They were afraid of the label that Jack had been given and even more afraid of how to handle it.
Autism is not a word you should fear,
It is a long emotional journey with twists and turns and overwhelming rewards.
Jack has so much love to give to be accepted by him is one of the purest unconditional gifts you could ever experience. So for them I was sorry.
I refused to take on board any of the negatives and decided to work with the positives, so we made a start with love and that special bond between mother and child.
I wanted to know all about what Jack wanted, what he enjoyed, I needed to experience his feelings as well as my own, We would watch videos together, if he sang I sang, if he danced I danced, we laughed together we spun together, we flapped we played we were happy together.
Jack loved cars and objects with wheels so we rolled balls, cars, lorries, money, spinning tops, anything I could lay my hands on that would spin. This was a solid basis to work and develop on.
I would always have a bag of Jack's favourite sweets with me so if I lost eye contact I could quickly regain it by placing a sweet in between my eyes.
I was able to introduce words, role play, turn taking. The cars we played with turned into garages where I introduced towns and people, colours and words, expressions and reactions.
Gradually I introduced Jacks sister Adrianne, as up to now Jack had favoured me and did not seem to want to interact with anyone else. I would sit behind him and facilitate for him with Adrianne, IT WORKED. Soon two playing became three and three became four. I was getting through and it was wonderful. We were making excellent progress, which both Jack and I were thoroughly enjoying.
Jack and I were learning more and more about each other every day. If he was sad I would hold him close and sooth him. At first he would object to close contact but soon came to rely on it and knew that this was security. When Jack was having one of his "moments" I would wrap him in my arms so he was cocooned in love and security gently stroke his head and whisper softly in his ears. This had such a calming influence on Jack and seemed to help enormously with his moments.
Of course this was not acceptable I was told, acceptable to whom?
The love and support I have for my child is unconditional if my child is having a moment in the middle of the supermarket it is not because he is naughty it is because he is finding it hard to express his needs. So I would comfort him, sooth him, love him and try to understand his needs. This is very acceptable in my life and very natural. If the professionals are saying (and they were) it is not acceptable to society then it is a sad and sorry society in which we live. A society that desperately needs to change NOT ME.
My special little boy was not being naughty he was finding it hard to express his needs.
I had been put in touch with Springboard, which is a local charity for children with disabilities. They offered Jack 6 hours support to help him attend a mainstream nursery and a placement in their local playgroup for one morning a week. Jack started nursery which was a wonderful school, not quite right for Jack but the lady who ran the school wanted to help and thought she could get through, and yes in her own way she did. She also helped me and was very supportive.
Unfortunately Jack needed more or different so we decided to move Jack and his support to another nursery. It was about this time when Jack seemed to be having problems with his ears again, and along came the next set of viruses and infections one after another although this time it seemed to be mainly in the ears. Once again the colds started to appear along with a constant flow of smelly discharge from one of his ears.
Once again Jack started to withdraw and I knew I had to act quickly.
The weeks were passing and we were back into the routine of visits to the GP and hearing specialists, but all they seemed to do was prescribe antibiotics. I was very open with my feelings towards antibiotics but was told that due to the hole in Jacks eardrum caused by the absent grommet they could not use any form of drops so I was told I would have to give the antibiotics.
Jack was becoming more and more withdrawn and once again seemed to prefer his own company than the company of others his words became fewer and he was starting to look weak and ill.
I remembered reading an article on AIA (Allergy Induced Autism) and decided to research more into this. Whilst doing so I was asked a number of questions concerning my son, the theory being that if I answered yes to two or more of the questions then there was a possibility that there could be a connection between his autism and his gut. I answered yes to all of the questions so after lots more research, advice and a visit to the dietician we decided to put Jack on a gluten and casein free diet. I was told he could suffer from withdrawal (cold turkey) but nothing could have prepared me for what I was about to witness.
It was difficult enough finding the right foods and paying extortionate prices for them, but to see your child constantly screaming so much so that his nose would bleed and violently attacking anything that crossed his path was heart breaking.
I was told to be patient that this would pass, and it did (eventually). Jack seemed much calmer and more verbal but the most amazing thing was that instead of Jack opening his bowels 8-12 times daily this very quickly became once a day, and within a few months Jack was potty trained. A task I had been working on forever but with his constant diarrhoea it had been impossible. Once again I felt I was making progress but unfortunately his ears were still causing me much concern.
From first noticing that Jack had lost a grommet he had countless appointments with hearing specialists and GP`s who all told us his constant infection was due to the hole in his eardrum. Another thing they all had in common was writing prescriptions for antibiotics.
It was about a year after noticing the missing grommet that I was forced to make some huge personal decisions in my life.
I decided that my children and I would go and stay with my parents who lived in a different county 200 miles away.
One night while settling the children down something amazing happened.
Adrianne was already asleep so I lay down beside Jack and explained in great detail why we were away from home, why Daddy was not with us and that no matter how far away Daddy was, or how long it would be before he saw him again. Daddy loved him very much.
It was a very emotional time and Jack seemed to be hanging on to my every word. He gazed deeply into my eyes the whole time never once breaking eye contact. At the end of the lengthy one-sided conversation I asked Jack if he understood… and if he did, could he please give me a sign. Jack continued to stare for a few seconds then put one hand to his ear as if holding a telephone and said
LOVE YOU TOO DADDY.BYE.
Jack had never said Daddy or love before nor had he ever spoken more than one word at a time.
I held my little boy in my arms and wept. We shared something very special that night. And there were many more to come.
The bond between us went much deeper than love.
Due to Jacks condition I registered him with a GP for the duration of our stay. On my first visit with the new health visitor at the GP`s clinic I expressed my concerns about Jacks ears. She very quickly made a referral for us to see a hearing specialist at the local hospital. It was there I was told my sons ear condition should not have been allowed to continue this long and if he wasn't treated for this quickly there was a possibility that Jack could lose his hearing. They also told me that they did not understand why I was told Jack could not have eardrops? I was confused and disappointed. The system had let me and my precious little boy down once more.
I returned to the family home and quickly got an appointment to see a surgeon at the children's hospital in Bristol. We entered the car park and Jack was distraught. He would not dress, he screamed, cried, wet himself and clung onto anything within his grasp to stop him from entering the hospital. It might as well have been me struggling as every emotion from my son was like a knife twisting in my heart (when would it stop).
We finally got Jack into the hospital with our emotions running high. A quick examination then we were told his constant infections were not due to a hole in his ear caused by the grommet coming out, as this ear still had a grommet. The grommet had been dislodged and needed to be removed as soon as possible.
Once again others had got it wrong. How could so many professionals have missed it?
I was appalled.
Once again they had put my precious child through endless stress, discomfort and ill health all due to their incompetence. Jack was readmitted for removal of the offending grommet. The procedure was planned very carefully so as to eliminate as much distress for Jack as possible. Yet another operation for Jack under General Anaesthetic. This time the hospital listened to me and I was allowed to take Jack home straight after the operation. Cocooned in love I took my special little boy home and vowed I would not let this happen again. If the medical profession were not thorough enough, I would certainly make sure I was.
I had no faith what so ever in the NHS or their systems. It was all so unnecessary, we had been told there was a possibility that Jack could be deaf at 8 months old then constant hearing tests. Some he passed and some he failed, others were incomplete or inconclusive. Years of unnecessary stress WHY?
Because no one wanted to be responsible for diagnosing autism or making that connection.
I know my child has pinpoint hearing but as with many autistic children he is able to turn it off whenever he chooses. I also believe that my child has never had a hearing problem just been put through a system that has desperately let him down.
I could not afford to waste my energy on what had happened. It was time to put the past behind us and work towards the future. Unfortunately the last few months had taken their toll on Jack so it was back to basics. Building bonds, security and a safe environment around him.
Once again I could see the rewards. He was making progress daily; he was learning new words that were much clearer than before. We started learning the alphabet and numbers. I was so proud of my little boy.
At our next visit at the children's clinic I couldn't wait to tell them about all the progress we were making. I told them how well Jack was doing on his numbers and alphabet just to be told he was merely mimicking me. (I knew this was true to some point but surely this is how children learn.) He was not mimicking me when I asked him for a letter or a number and he would point or give me the correct one from whatever order I had arranged them. He was learning and thoroughly enjoying it too. We were having fun!!
I would praise everything Jack did, every noise he made, every word, and every action. Encouraging him constantly to take the next step. And always making it fun and exciting. Jack was doing so well that we decided to increase his hours at nursery. As up to now Jack had only been attending two mornings a week. He had established a good bond with his support worker and was enjoying being around other children and watching them play but as yet had made no effort to join in.
I decided to take on another support worker to do the extra morning but I also invited her to work with Jack and I for one afternoon a week at home. First watching and observing then gradually bringing her in to join us. I felt this gave her more tools to work with in nursery as she was learning about what Jack was interested in, what motivated him and how to develop this. He settled into a routine very quickly and was happy with his new support.
The holidays were drawing near and a decision had to be made soon about whether or not to keep Jack in nursery during the holiday period. I was advised to keep him in so as not to disrupt his routine, but decided we would enjoy the holidays as a family and have as much fun together as possible.
Chapter Three will be here soon as I tell you how I entered the fight for my precious little boys future.